Life Experiences in Neuromuscular Tracheotomized Patients in Times of Covid-19

**Background:** Patients with neuromuscular diseases (NMD) and chronic respiratory failure often require home invasive mechanical ventilation (HIMV) via tracheostomy, which can be complex and affect quality of life. The COVID-19 pandemic created unprecedented challenges for these patients, including reduced access to healthcare and increased feelings of abandonment. This study aimed to explore the experiences of NMD patients with tracheostomy and HIMV management at home during the COVID-19 health emergency in Italy, focusing on correlations between resilience, flexibility, anxiety, and mindfulness, as well as qualitative emotional experiences.

**Methods:** This prospective multicentre quanti-qualitative case series study recruited 22 patients (50% female, mean age 50.2 years, SD 21.2) from two Italian hospitals between December 2021 and April 2022. Inclusion criteria were adults with NMD (ALS, SMA, DMD) with a tracheostomy during the pandemic. Exclusion criteria were cognitive impairments limiting comprehension. Participants completed psychological tests: Connor and Davidson Resilience Scale (CD-RISC-25), Acceptance and Action Questionnaire-II (AAQ-II), State-Trait Anxiety Inventory (STAI), and Langer Mindfulness Scale (LMS). Semi-structured interviews were conducted with 5 participants (22.7%) who agreed. Quantitative analyses used Spearman rho correlations; qualitative analyses used Interpretative Phenomenological Analysis (IPA).

**Key Results:** Participants who showed higher levels of dispositional mindfulness in terms of novelty seeking (r = 0.736, p = 0.013) and novelty production (r = 0.644, p = 0.033) had higher resilience. Specifically, the personal competence and tenacity subscale of resilience correlated positively with novelty seeking (r = 0.745, p = 0.012). Novelty seeking also correlated with self-confidence and emotion management (r = 0.691, p = 0.023) and positive acceptance of change (r = 0.829, p = 0.002). Higher engagement correlated with greater anxiety (r = 0.682, p = 0.021) but also higher flexibility (r = 0.632, p = 0.037). Qualitatively, the main emotion was fear of contagion (19 patients, 86.36%). The tracheostomy was perceived in extremes: as a lifesaver (e.g., "a way out", "an angel who runs to save me") or as a condemnation (e.g., "the anteroom of death", "like a robot"). Four superordinate themes emerged: emotions (abandonment, isolation), challenges and difficulties (helplessness, confusion), relationships (absence of healthcare providers), and satisfaction (lack of continuity of care). Only 5 participants (22.7%) completed interviews due to communication issues and fatigue.

**Clinical Implications:** The study underscores the importance of fostering mindfulness and novelty-seeking coping strategies to enhance resilience in NMD patients with tracheostomy, especially during crises like the COVID-19 pandemic. The strong sense of abandonment and lack of continuity of care highlight the need for telemedicine and remote psychological support to maintain care and reduce isolation. Clinicians should proactively discuss tracheostomy decisions and provide comprehensive information to improve patient satisfaction and emotional well-being. Future research should evaluate quality of life and the impact of telemedicine interventions in this vulnerable population.